Self Care Sunday Chats

I took a break.

I’m not apologizing for it. I needed it and it was enjoyed. Today I decided it was time to come back. I’m refreshed, ready to make some changes, to make some new connections and to offer my story and support for Ulcerative Colitis patients and others.

One of these changes will be Self Care Sunday Chats. While on this break from blogging about my life with Ulcerative Colitis, I’ve been focusing a lot on listening to my body, and acting on what I hear.

Remission is great, but it is tricky. Remission doesn’t mean that my body works exactly like it did before I was diagnosed with Ulcerative Colitis. It is still a different form of life that takes adjusting and getting used to. Some days I feel as though I never had this disease in the first place, and then I have to go into an infusion center to get my medication for 4 hours and I am reminded that life really is different. Some days I wake up feeling great, and some days I’m so exhausted I can barely take my eye mask off my eyes when I wake up. Every day is different, but there is good in every day.

I am well aware of how lucky I am to be in remission. This awareness was part of the reason that I needed to take a break from the community in the first place. I needed to enjoy this moment in my life and focus on the blessing of not having active disease instead of complaining about my past with it. I needed to figure out where I fit in this community now that I wasn’t flaring or trying to find a treatment plan or a good doctor. I have those things. It’s amazing, and it’s taking a long time to get there, and I don’t know how long it will last. I wish all Ulcerative Colitis patients could have these things.

When I was hearing stories of my friends in the IBD community suffering, my heart would just break and I would feel like I needed to apologize for being in remission. There are so many others who were struggling to find a doctor who would listen to them, or  who were recovering from surgery without infections or having terrible reactions to medications. I felt like no one wanted to hear about how my medication and lifestyle changes were working or how I had a doctor who actually follows up and takes the time to hear my full story with this disease. I didn’t want to come across as bragging or arrogant. There were articles being tweeted around and polls about how people didn’t want to hear about success stories because it didn’t help them feel better.

Maybe some people don’t benefit from hearing about any positive outcomes from Ulcerative Colitis. I can understand that. And I accept that. We all have different ways of coping or not coping. The reason I’m still sharing my story is because I think about the person who comes out to the blogosphere after receiving a diagnosis. After typing in the disease in the search bar and hitting enter, how many of those articles are going to contain horror stories?  How many are going to talk about how it is STILL POSSIBLE to have a life with Ulcerative Colitis? It might be a different life than you expected or planned for, but it can still be enjoyed.

So, that’s why I’m back. I’m back for the people I’ve connected with, and for the people I haven’t met yet who are looking to find out how life can still be enjoyed with a chronic illness.I’m back to share, to support, to connect and most importantly to share the joy I’ve found with this disease. Yeah, there is still no cure. It still is a beast and a terrible disease. But I’ve managed to find joy through it all, and I’m sharing that.

What I’ve Been Up To

My husband and I have set off on our own adventure this year, and started another blog to share our travels. If you’d like to check it out click on the link here: www.mibreakfastadventure.com

He bought me a nice camera for Christmas and I have fallen in love with photography. I’m actually attending my first photography club meeting this weekend and I’m so excited. You can see some of my photos on Instagram @mibreakfastadventure . We have been traveling to various breakfast joints across the state and just exploring those areas and sharing what we find. It has been a blast so far, and we have seen so many beautiful things. I’m truly happier than I have been, perhaps ever.

I’ve stopped trying to force myself and my body to morph into something that it is not made to be. It was becoming easy for me to rush, rush, rush and stress to make everything perfect. Instead of working with my body I was trying to beat it and push it to be “normal.” I can’t beat my body. And it’s not productive or healthy to keep trying to. I have found it more beneficial to care for it, and that’s how self-care Sunday came about.

Self Care Sunday

For these future Sunday posts, they’ll basically just be chats written in the morning about whatever flows through as I’m typing here. I’ll share what I’m doing to care for my body today, and anything else that comes to mind.

This morning I just drank a matcha green smoothie and a gluten-free donut because I’m all about that balanced life. I plan on going for a quick brisk walk in a bit here, quick and brisk because it is about 8 degrees outside with the windchill and I am not all about that.

This afternoon I plan on running through some practice questions for an interview I have on Monday for a new position in my office. I’ll get the laundry done and the dishes put away, and spend some time sorting mail and then maybe color for a little bit. Eventually I will get the veggies and fruits chopped and prepped for the week ahead, and sip on some mint-infused water throughout the day. I might even curl up with a book if it sounds good. Basically, today is about active rest and getting prepared for the week ahead.

I’ve added to my routine the practice of “what is done is done.” After 8 pm, if there are chores that still need to be completed, they can wait because I am now done for the day. I make a cup of hot tea, sit down in the lazy boy and snuggle up with my pets. I might read a book, I might watch a TV show or just listen to some music. I might call my grandma. I might hop on social media. Whatever I feel like doing at the time. After 8 pm, chores and obligations are done. No work, no laundry, no dishes, just restoration and enjoyment. It’s an hour to get my mind right and end the day on a good, peaceful note before heading to bed. It has been so beneficial, I highly recommend it to anyone.

My challenge to you is to test it out this week. Set aside a time for yourself where work or chores are not allowed. Make it work for you. Maybe nights aren’t good and you need to do mornings. That’s okay. Or maybe it’s in the middle of the day. Just take the time. Turn off your phone. Connect to yourself. Try it, and let me know how it goes!

See you next Sunday 🙂

 

 

 

 

Health Activist Writer’s Month Challenge: Day 4, A letter to my Newly Diagnosed Self

Sorry for the delay, I was away for the last two days participating in a patient panel for Ulcerative Colitis and I could not get the internet to work on my phone so just had to wait til I got home to write.

Day 4: Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.

Dear Self:

By now you are probably coming down from the anesthesia and are realizing that while you finally have a diagnosis of Ulcerative Colitis, you have no idea what that is. The doctor told you to go to the internet to do some research, and I am here to tell you that there is a lot of scary stuff out there, so be careful and cautious about what you read. Start building up a support team, right now. Make sure you have a GI you can trust, a primary care doctor who stands up for you and supports you, a yoga practice that grounds you, and family and friends who will not let you down.

This is going to be the hardest thing you will go through in all the years of your life so far. Your life is going to change. There are going to be lulls and uproars and pits of despair and highs of gratitude. Hang on. You will find a treatment that works for you. Do not despair when something isn’t going right or nothing seems to work. You will find what works for you. You will be sick, but you will heal, and you will have a new appreciation for the good days that you do get. A huge appreciation. Learn coping skills and stress management.

Get on Twitter and Instagram. There are people out there who know exactly what you are going through and they will be some of the best people you meet in your life. Hold them close, they will be huge resources and sources of inspiration for you right when you need them.

This disease is individualized. Don’t judge others for their treatment plan and don’t compare it to yours. Find what feels good for you. ADVOCATE FOR YOURSELF. If something doesn’t feel right, speak up. This is your body. These are your veins. You know yourself best and you have rights.

You are not alone. Life may not be the same, but the new life you get is still pretty damn awesome. Don’t let go, keep fighting and get involved with as many opportunities as you can to raise awareness and change the way chronic illness patients are treated.

You can do this.

 

 

The Health Activist Writer’s Month: Day 3

Quotation Inspiration. Find a quote that inspires you (either negatively or positively) and free write about it for 15 minutes. 

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
-Emily Dickinson
This is more of a poem than a quote, but I love it anyway. To me, there is no life without hope. It doesn’t take a lot of effort to have hope, it takes a lot of effort to destroy hope. It doesn’t ask for anything in return. It’s always there, sometimes you just have to look a little harder for it.
I find comfort in looking for hope. I don’t like to ask why certain things happen, why I was diagnosed with an autoimmune disease, why some people are having problems healing and why I’m lucky enough to be in remission. I don’t ask why. I may never know the answer. I don’t look for the reason, I look for what good could possible come from a situation. I know it’s not easy for everyone to do, but I promise it makes life so much better.
There’s something to be hopeful for even in “the Strangest Sea” or the worst flare or the loneliest night. It makes your soul come alive. It sings. It floats. It lifts you up.
Hope is powerful. Some people think too much hope can lead to disappointment, but I don’t feel that way. I’d rather live in a world with too much hope than to not have any at all.

The Health Activist Writer’s Month Challenge: Day 2

​Every great writer has their own process! What’s the blogging process look like for you? Do you set aside time each week to write or do you wait until the inspiration hits? Do you finish a post in one night or use the week to perfect it? Do you edit your blogs or just hit publish? Whatever it is you do, it’s unique to you and we want to learn about it.

I have bad habits when it comes to blogging. When I first started I was posting Hope Warrior stories regularly on Wednesdays and then one other day of my own thoughts. Over the last year, the regular practice of sharing Hope Warriors has fizzled out. I am still more than willing to share inspirational stories, but people are busy. I send out interviews and they don’t get sent back. I don’t like to push people because I know what chronic life is like and I would rather have patients put themselves as a priority than stress about responding to my email. 

The lack of participation wasn’t the only contribution to my irregular posting. I also got married in June, so most of the last year and a half were spent planning (I LOVE PLANNING) and enjoying all of the festivities that come with getting married. Life has been good. 

I’ve been contacted to partner with more companies and bloggers lately, and that has pushed me to get back in to posting regular content. I’m still working on making updates to the blog and creating a regular posting schedule. I work full time so right now I just post whenever it is convenient. Currently I am on break at work, typing on the WordPress app on my phone. I’d like to get better about editing and learning more about creating cleaner, better posts, but for now getting back into writing is the goal, so I just hit Publish as soon as I can. Things might be a bit sloppy, but I’m writing again and hoping to support others. Right now, that’s what is important to me. 




The Health Activist Writer’s Month Challenge- Day 1

:What?! Three blog posts in one day? This is madness.

Yet, it’s true. In an effort to get back into this and continue to truly try to help others, I’m going to try and participate in this challenge this time. It might not be a blog post every day, so check me out on Instagram because I’ll probably post more there as I’m still learning the ins and outs of WP, and the ‘gram is just easier sometimes.

Without further delay, let’s get started with day 1 of the November HAWMC.

Q: First, Let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15 to 20 minutes without stopping. 

Hi! My name is Jacklyn and I started this blog as a place to share the struggle I was having facing the diagnosis of Ulcerative Colitis. In 2013 I was diagnosed, and by 2014 I was hospitalized as we were not able to manage the symptoms of my disease. Over the years I have tried multiple medications, diets, stress management tools, support systems and everything I possibly could to fight this disease. When I was given the diagnosis, I was told that there was no cure, but the goal was remission and we would try everything we could do to get there. Eventually I was stable enough to start Remicade, and I have been getting infusions every 8 weeks ever since. I am currently in remission.

The physical symptoms of Ulcerative Colitis are terrible. The pain can be unbearable at times and the complications and side effects from medications, all of these things are important in understanding the disease, but that’s not why I’m here.

My mental health had a bigger impact. I was depressed, anxious, angry and grieving my old life. I was 24 years old and I was just starting to begin my adult life. I had dreams and plans and they were all, it seemed, stolen from me because of the diagnosis of this disease. I had no idea how to cope with that. I told one doctor of my anxiety, and she shrugged and said “that must be rough” and moved on with her day.

I started this blog in the middle of this process to convey my struggles, to put words to my feelings, and to show others that there still can be a life with a chronic illness. There may not be a cure, and life may certainly not be what you see on TV or what you thought it would be like, but it’s a life. And there’s good to be found in it.

The whole concept “Flareup Hope” started with a conversation with my dad. I told him I was starting a blog to help raise awareness and to connect with other people who were going through the same thing. We brainstormed, and came up with this because in the deepest darkest moments of my last flareup, what I held on to was hope: hope for healing, hope for getting through one more minute, one more sunrise, one more day. Finding hope has become my mantra. I search for people who are willing to share their stories (message me if you would like to) in order to inspire others to keep fighting.  I share my own thoughts and challenges and medical experiences.

I do not claim to be an IBD expert, or an advocate, or to have the answers for you. But I am a real human with Ulcerative Colitis, an autoimmune disease that does not have a cure. I am a patient, a daughter, a spouse, a dog mom, and someone who loves to write, take pictures and go on adventures and starting projects. I have dealt with depression and anxiety and I have grieved the life that my chronic illness stole from me. I’ve developed a sense of gratitude for this new way of living, and I share some of my methods and coping mechanisms for dealing with all the feels these conditions bring.

My mission here is to provide sparks of hope to people that need to keep fighting. It only takes a spark to light up a room.

Thanks for bearing with me on this first ramble of a post. Can’t wait to read everyone’s day one intros!

 

 

 

 

 

 

30 Days of Gratitude Challenge

I’ve been utterly exhausted and so frustrated about the amount of negativity and attacking I’ve seen on social media lately. I’ve been lurking in the background swiping through posts upon posts of complaints and negativity and worries and fears. This toxic thought pattern has drained part of my spirit and makes me question why I came out to start this blog and find support out here in the first place.

I’m starting a 30 day gratitude challenge for myself. I need this. I need to reconnect with why I blog about how having a chronic illness impacts my life and my mental health.  I need to get back to gratitude for being alive, for having the gift of this life. I need to determine if I want to continue this. Be the change, right?. I’m tired of the negativity, so I’m not going to contribute to it.

Do you feel drained? Maybe you need this too?  Feel free to join me, I’ll be posting daily throughout November in honor of the month of Thanksgiving- and just reminding myself to give thanks, and to find the light in the darkness.

Here are the dates and suggested writing topics I created for the month to spark a gratitude practice. Feel free to screenshot, join, share and follow along on instagram and twitter, I’m @flareuphope pretty much everywhere. Let me know what you’re thinking of his month and tag me in your posts so I can see.


Chronic illness isn’t fun, but there’s always something to be grateful for. Stay tuned for my first post tonight!

Hope Warrior -Kristen Boehmer

It’s a new Hope Warrior Wednesday!

I’m so happy I get to share a little bit of Kristen’s story and how she copes with having a chronic illness. She’s a busy gal, but was able to answer a few questions. Make sure to check out her website Living Loving Paleo and her instagram @livinglovingpaleo for some mouthwatering food photography and her life with Crohn’s Disease.

Meet Kristen!

I was checking out your story on your website (I will link it here), and boy have you been on an unbelievable journey. I know you were young when you were first diagnosed with Crohn’s Disease, but do you remember how you felt when you received the diagnosis?

Being diagnosed with a chronic disease isn’t something that I could fullyunderstand as a kid, which in some ways, made it easier to cope with. My parents immediately took full responsibility for my health, but at the same time, I did have to grow up quickly.

Taking 96 pills a week at age 12 is a lot to swallow, no pun intended. What would you tell a pre-teen going through something similar right now?

I would tell a pre-teen that no matter what, they should never, ever give up. It may feel like your world is falling apart, but if you allow it, your illness can actually become your greatest gift.

It is really frustrating when I feel like some doctors are not hearing me. It sounds like you went through something similar. How do you advocate for yourself now?

I’ve found a practitioner outside of conventional medicine who really listens, and that’s made all the difference. Thankfully I’m healthy enough now that I don’t need any sort of outside intervention.

What is your current treatment plan? (Natural and pharmaceutical if applicable)

After spending many, many years on medications, I’m now able to control my disease completely through diet and lifestyle. I eat what makes me feel good and live a life that I love.

 Your website has lots of delish Paleo recipes. What inspired you to start Living Loving Paleo?

I wanted a place where I could share my journey (outside of social media) as well as my recipes, so a blog felt like the perfect format.

How do you balance working full time with managing your chronic condition and spending time with your family?

While I have Crohn’s Disease, it’s thankfully no longer something that I need to manage. I work from home and accomplish much of what I need to get done while my husband’s away at work (he works 48 hour shifts as a fire fighter), so that when he’s home, we can spend much of our time together.

You talk about the fatigue, waking up tired and going to bed tired when fighting infections and the ongoing battle an autoimmune disease fights with your body. Do you still have days like these? What do you to conserve energy?

My health is by far the best it’s ever been, so thankfully those days are VERY far and few between! If I do come down with a cold or the flu, I simply set everything else aside and completely focus on my health. My immune system is fully functioning now, so I’m very rarely sick for more than a couple days.

 We went to San Francisco on our honeymoon and feel in love with the city. I am so jealous that you get to live near a city with the best coffee and some awesome food options! Eating at a restaurant can be difficult for IBDers who are afraid or embarrassed to ask their food to be cooked in ways specific to their needs. Do you have any tips for handling these scenarios? 

I have a great dining out guide where I’ve shared all my best tips and tricks! It

can be found here – http://livinglovingpaleo.com/2016/06/15/tips-dining-

paleo/

I truly believe that our environment can play a huge part in healing. Do you have an area in your home that helps you gives you the hope you need to keep fighting? What does it look like?

I really do my best to keep my entire house filled with calm, healing energy.

How do you treat yourself when you want to indulge?

I get a mani/pedi or a massage and take myself out to lunch!

What are some of your favorite books and or music/podcasts?

I love reading and have too many books that I’ve enjoyed to list off. As for podcasts I love Balanced Bites, The Sessions With Sean Croxton and The Tim Ferriss Show.

If someone were to ask you to tell your story in one sentence, what would it say?

Although my journey hasn’t always been easy, it’s given me the most beautiful life I could ever imagine.

 Do you have a mantra or an image that you use to give you strength or encouragement?

I recently heard Tony Robbins talk about achievement versus fulfillment, and it really stuck with me. I don’t have a specific mantra or image, but I believe in filling my own cup up before I can give to anyone else. When I’m fulfilled and loving life, I put out my best work.

What are some of your hobbies and activities you enjoy?

Cooking, reading and being outside with my husband and dogs.

Where are some of your favorite places to travel?

Hawaii for sure!

 

Who gives you hope? Do you have any “Hope Warriors” that inspire you?

While my husband has always been my number one supporter, he’s taught me to love and cherish myself first, so I’ve become my own “hope warrior.”

 

Thank you so much for sharing, Kristen!  I’m so glad you’re doing well and enjoying a beautiful life. Love your story, and I’m honored to share it. 

Happy Wednesday Folks!

Will Essential Oils Cure IBD?

No, they won’t. There is not a cure for IBD. 

They do, however, smell amazing and have some pretty cool benefits that could improve your attitude and maybe ease some physical symptoms, and perhaps much more. (Disclaimer: I am not a doctor, I am not providing advice, I’m sharing what I learned at this workshop and my experience with essential oils thus far. I encourage you to do your own research.)

I took an essential oils workshop last week at Hilltop Yoga in Oldtown and really gave my scent sorter a workout. It was very interesting and educational, and I took away a few items that I’m bringing to my home environment. Maybe it will help ease some symptoms and increase quality of life or maybe it will just make my home smell amazing. I can find nothing wrong with being surrounded by good, natural smells that I enjoy.

So what exactly are essential oils? Essential oils are taken from plants in concentrated forms. Oils are broken down into a few categories depending on the plant itself. They could be roots, trees, herbs, blooms, seeds or other plant parts.  For example, Chamomile is a bloom while Thyme is generally considered a herb. The oil itself in pure form is used in aromatherapy practices and each oil has a different properties and different practices depending on what it is composed of.

One of my favorite moments of this workshop was at the beginning when the speaker stated that nothing she says here is going to cure an ailment. Essential oils aren’t cures, they are not evaluated by the FDA, but they have been around and used in medical practices since the beginning of time. She wasn’t forcing anything and saying you MUST use this if you have digestive conditions or you MUST do this if you have anxiety, but she talked about what symptoms the oil is known for helping to ease and what she’s found by experience in her own life. The sense of smell is highly personal, a lot like IBD treatments/symptoms where one size doesn’t fit all. Someone may really believe that rose essential oil (known for easing grief) eases their anxiety and offers comfort. For you, rose might remind you of your grandma who passed away and make you more depressed. You have to find what works for you, what feels good for your lifestyle, and it might be different every day. Maybe today the smell of Lemon makes your home feel clean and refreshed and tomorrow Eucalyptus brings you the focus you need to write that blog post you’ve been putting off for weeks.

I love that approach. Find what gives you that spark you need today.

If you’re curious about some of the more popular oils and some that maybe you haven’t heard of, I’m sharing a few of my favorites that I jotted down in my notes from that day. Most of what she was saying she was reading out of one of the books she had brought to class, which I believe was from Essential Oils Natural Remedies: The Complete A-Z Reference of Essential Oils for Health and HealingShe also stated that she had many other resources and had been studying for over 20 years so was also sharing her own personal experiences.

Again, I’m not providing advice. I’m sharing what I learned some of these oils have been found to help with throughout history and by other individuals in aromatherapy. This may not be true for you and you should always consult a medical professional for advice. 

Marjoram: known for pain relief. Smells like Vick’s vapor rub to me, which I oddly find soothing.

Thyme: increases white blood cells. Good in combination with citrus oils for diffusing.

Bergamot: boosts happiness. Works well in areas that experience Seasonal Affective Depressive Disorder. It smells like an awesome sunshine blue sky day. Will probably get some of this for Michigan mid winters, when it’s grey and the sun hasn’t shown its face for weeks.

Cloves: this was my favorite scent of the day. It is known to provide comfort, is full of antioxidants to boost the immune system and is useful for treating depression and anxiety. This was the scent I chose to leave with, she put some drops in almond oil and told me to rub it on my neck hairline as I left class. I went grocery shopping after and got whiffs of the scent throughout the rest of my day. It honestly improved my mood each time I smelled it.

Myrr: known for healing wounds and was used for that purpose in ancient Greece. It’s a really thick, dark resin. It may assist in reducing inflammation in the digestive system.

Chamomile:reduces mood swings and eases PMS symptoms.

Lemon: uplifting, inspires positive thinking. Fresh and purifying.

Peppermint: cool, stimulating. Can aid head and muscle aches and promote a healthy digestive and respiratory system.

Lavender: stress reducing, comforting, relaxing.

If you’re looking to start bringing essential oils into you home, you could start with just a spray bottle from the dollar section at the grocery store and distilled water.  Throw some drops of your oil of choice in the bottle, add the water and then spritz around your home as you desire. Maybe keep it in the bathroom and spritz it on the shower curtain before you jump in, on the bathmat, fan, really wherever you want.

Then, if you find it’s really something you look forward to and want to invest in a diffuser or burner, you already know you like the scent and if it makes you feel better. If you want to use them with a carrier oil (like almond, coconut etc) and mix a few drops in then rub on you neck, temples, hands, whatever, BUT do your research first.  Some of those essential oils, like peppermint or cinnamon, are so strong they can actually burn you if you put them on your skin directly without a carrier. If you have animals in your home, make sure the oils you are using are pet friendly. While we are on the topic of research, I’m just going to go ahead and remind everyone that not everything you read on the internet is true. Use your brain, have an open mind but be cautious. Look at who is writing the article.  Again, I’m not an essential oil expert, I’m just sharing my experience. Think for yourself.

On my own essential oil adventure I made a yoga mat spray with tea tree and lavender and it’s awesome. I used tips from Adriene and the video is here. Do you use essential oils? How? Let me know! Find what smells good.

 

Resources: Aromatherapy. University of Maryland Medical Center. http://umm.edu/health/medical/altmed/treatment/aromatherapy

Hope in my MRI scan

* warning* this is a long post
If you are looking for my tips on how to prepare for an MRI and don’t care about my experience scroll to the bottom. Thanks for reading!

I wanted to share my MRI experience last night in hopes to prevent others from going through what I went through. I was told that this would be a 30 to 45 minute scan, with no contrast but lots of breathing and holding my breath.

First off, let me say that I went into this with complete confidence. I’ve had an MRI on my back years ago and knew what it was like and was prepared for it. However, this turned out to be an entirely different experience.
I arrived at the hospital at 645 for my appointment at 7pm. I checked in, completed a form and sat down in the waiting room.
At 730 a tech came to get me and escorted me to a locker room. They were out of scrubs so she had me wait while she went to get some for me to change into. When she came back she showed me where to change and lock up my personal belongings and said she would be right back to escort me to the MRI.
Scrubs are so warm and cozy. Not. I was freezing.
Here I am modeling my new outfit.

image

I paced the locker room that i had been left alone in while waiting, trying to stay calm and ease my anxiety. 30 minutes later another nurse came in to get me, not the original person. She acted surprised that I was still in there and asked if J* had been in there yet. She said she didn’t know where the original person was but that she would take me back even though I wasn’t her patient. This person (we shall call her S*) ended up being my angel that night, but at the time I was a bit frustrated for being forgotten about i had been at the hospital for over an hour at this point.  When we arrived back at the machine she asked me if I had been told how this would go. I said no, I had only been escorted to the locker room and told to wait there.
She had me sit on the bed that goes into the machine and handed me some earplugs. She got me a warm blanket and then the other nurse (j*) showed up and tosses a bag of fluids and contrast in my lap.
“Okay! Ready for your IV!?”
uh. What?
No one said anything about an IV.  The phone call prior to coming on to the MRI said I wasn’t having any contrast. I had no prior knowledge of this.
I felt my heart racing as I stared at the huge needle that had been dropped in my lap. My veins are poor and I had to stop drinking water at 2pm that day per the phone call for my scan. I knew I was dehydrated and would be a hard poke, and hadn’t prepared for it. You just don’t drop an IV bag and needle in a person’s lap without a warning. Especially me. Don’t do that to me with needles. I work hard to decrease my anxiety and it takes a lot of preparation, dropping a needle in my lap doesn’t help anything, especially right before I’m about to be stuffed in a small machine.

“Are you sure you have the right patient?” I asked. “I was told this would be a no contrast MRI,  just lots of breathing.”
“Nope,” she said without even checking. “Your orders changed and you’re essentially getting two MRI’s today.”
S* saw the sheer panic in my eyes and asked if I was okay. I stated that I’ve had some really terrible experiences with getting IVs before when I’m not prepared or hydrated enough and that this was a shock for me. I then went on to say I needed to be heat packed and needed a baby needle and they may need to contact the IV
J* interrupted and said she wished I would have told her this earlier so they could have worked on it already. (When would i have done this? When you forgot about me in the locker room?) She then said she would try a couple times and we would call the iv team if necessary.

Thank God S* took over and said she used to be an outpatient surgical tech and felt confident that she could get it on the first try. She asked J* to get a smaller needle, told me to lay down and breathe and try to relax.
She got it on first poke.
J* asked me why I was there, I explained that I have ulcerative colitis and the MRI is to check for bile duct cancer.
She asked when I went to the lab to treat my “colitis” and I replied it’s ulcerative colitis, not simply colitis, and I don’t go to the lab, I go to the infusion center and it takes a few hours for my medication.
She then shrugged, gave me ear plugs and had me lay down, strapped me to the table and put a brace like thing over my stomach. She said to stay as still as possible and said to listen to the prompts from the machine and that she would guide me through the whole time.
She left the room, and S gave me the panic button to push in case I had any problems. She put my arms above my head and a bolster under my legs and heard her leave the room as I  breathed deep and waited.  And waited. And waited.

And finally J came on the overhead and said the table is going to move, and in I went. I closed my eyes and took deep breaths.
The machine came on and told me to take a deep breath, let it out, take another deep breath and hold it. I held my breath while I counted, sometimes to 5, sometimes to thirty five until it told me to exhale. And it would make the sounds like the alarm and shake and beep. And I breathed. And this went on for what seemed like forever. My hands and toes were tingling and numb from being so cold, and I was started to get anxiety because I knew I had been in there a long time but had no concept of how much longer it would be.
J* came on the speaker and said I was doing great and they were going to start the contrast now, not much longer. I thought the contrast had already been in me. This must have been about an hour after we started. The contrast stung a bit as I felt it travel up and back down my arm again. I breathed, and tried really hard not to cry as I wondered why I had to go through this. I just kept thinking of my fiancé and going to California on our honeymoon and being somewhere warm and my family.
The machine had me hold my breath and breathe, hold my breath and breath for maybe 5-10 scans and then one scan lasted for maybe 10 minutes, no status update from the S* or anything. Finally it went silent. I lay there and counted to 100. Nothing happened. I said “hello? Can anyone hear me?” Nothing. Silence. My shoulders were aching, my feet were numb and my hands were tingling and I was starting to think they forgot me. My heart sped up and I tried to focus on remembering breathe. Finally she came on the machine and said one, maybe two more scans and we were done. Okay. I thought. Can’t be more than 5 minutes. I can do this. And closed my eyes again and breathed.

I heard the door open. I’m done!  I thought. I made it! And I looked up and backwards a to see S’s face. She said they entered the numbers in wrong and needed to redo the last 4 scans. (Wtf?!) She asked if I was okay and I said not really. I’m freezing and really uncomfortable and ready to get out. She felt my hands and said they were ice cold and got me a warm blanket to go over them and around my head. I asked her how much longer and she said about 15 more minutes. I breathed feeling the tears form and said okay.
I made it through the next 15 minutes dreaming of vacation and going through everything I am thankful for. And crying.
Next,  it was silent again for a few minutes I stretched, and waited thinking finally (again) it was over.
Then J* came in and said okay hun we have a few more to do, we can’t seem to get the machine right but you are doing just fine keep staying still, ok?
I was done. I had been in there for who knows how long at that point and this was the third time she said it would be one more time. I said nope. I’m done. They can use what they have at this point. 
So she left the room and talked to whoever and then the machine scooted me out and said she said well I guess it will be good enough. I was shaking through my whole body. S* came in with a blanket and wrapped me up. She then took out my IV and realized J* had taken away the cotton balls so there was blood dripping down my arm. S* explained to me what had happened during the scan and that I had been in there for almost 2 hours and was very strong. She said it was a very hard test, essentially two tests and I did great at staying still. She apologized for how long it took and that I wasn’t prepared for it and walked me to the locker room. It was 10 pm by the time I got to the locker to change my clothes and then had to wait another 20 minutes for the cd to be printed. I called my fiancé in tears, and drove home on the snowstorm.

If you read this whole thing, thank you. I wrote this in hopes that someone else preparing for an abdomen/bile duct MRI will know what they’re in for. So they will know it’s not a 45 minute scan, it’s about 2 hours. You will have an IV, you will have to hold your breath a lot and you should wear really warm fuzzy socks. Ask for extra blankets. You might not think you’ll need them when you get in there, but it only gets colder.  Don’t be afraid to hit the panic button if you need a break. Have someone there to take you home because even if you think it’s no big deal, the reality of it is you could benefit from the support.
And wake up in the morning feeling thankful. I woke up today thankful for my supportive,  loving fiancé who made me tacos and paleo tortillas and kept the warm and waiting for me to get home. I’m thankful for my health insurance that allows this test to happen. For my family. For the sun being out today. Let the experience remind you of what you have and what you are capable of. Don’t let how someone else treats you rob you of joy. You are more than a patient in a machine. You are a person,  and I bet you’re an amazing person. Remember that.

Hope in Paper Flowers

I’m getting married in June.
At my recent doctors appointment, my PCP asked , “So, you’re working full time, planning a wedding yourself, trying to stay healthy, workout and stay in remission all at the same time? Aside from every other life task,  am I missing anything?”
No, Dr. Miller. You’ve got it.
It’s overwhelming sometimes  managing your own care and trying to have a life at the same time. I’m constantly checking in with my body and asking myself a million questions about my physical and mental state. It’s like one of those questionnaires at the doctor :
Any bleeding today?
How many glasses of water did you drink?
How many hours of sleep did you get last night?
And then, add the wedding planning on top of that…
When are we meeting with the officiant?
Are we having a brunch?
Where will we buy our wedding bands?
How can I pay for this and pay my medical bills too?
And add on top of that all of the other stresses that come with planning a wedding (future in laws, bridal party organizing, pressure from outside sources to fit a certain mold etc etc etc) I could go on and on but I think you get the point.

It’s hard.

Over the next few weeks I’m sharing what I’ve been doing to manage my autoimmune disease and get this wedding how my fiancé and I want it to be, simple, beautiful, and about us. (Duh). If you aren’t planning a wedding but just living your life with with a chronic illness these tips may still be able to help. They are tidbits of what I’ve found to help me along the way.

1. Do what you can, when you can. It will be enough.

I don’t know how many times I’ve repeated this little mantra to myself over the past few months. I know a lot of people with chronic conditions fight a feeling of guilt when they aren’t able to accomplish all of the things “normal” people seem to be able to do.
Folks, none of us have super powers. Even so-called normal people.
Sometimes you decide you don’t give a flying pigeon about having real flowers and fake flowers are just fine. Or you decide you don’t want a brunch the day after the wedding to your MIL’S dismay because it is just too much work and too exhausting to even think about. It’s okay.
Some days you’re crossing items off your to do list  (one of many) like it’s your job. And some days the most work you get done is venting to your bridesmaids. Sometimes its looking at your bank account and saying, I can’t do anything this week.
All of this is okay.
Repeat it.
It is okay.
Do what you can.
A lot of the time all I can do is take old romance novels and cut the pages into squares and fold them into flowers. It costs me nothing, I think they’re pretty, and it goes with our wedding theme. You might have to get creative on what you can do some days. Some ideas on what you can do when you feel like you can’t do anything:
*Breathe. Seriously. Focus on inhaling and exhaling. It works.
*Pet your dog (or cat) or stuffed animal or heck even a rock if that’s your thing.
*Write in your journal.
*Watch Netflix
*Make lists.
*Color.
*Sleep.
*Listen to music.
*Call/text a friend
*browse Pinterest
Etc. Etc. Etc.

  Whatever it is, know that it is enough.

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There’s a lot of pressure sometimes from what other people think you should be doing. I’ll touch more on this later on, but for now, just know, whether you’re planning a wedding or just trying to get through the day while your body is raging war against itself, whatever you are doing is enough. Really, it is.